:Recent neuroimaging research on disorders of consciousness provides direct evidence of covert consciousness otherwise not detected clinically in a subset of severely brain-injured patients. These findings have motivated strategic development of binary communication paradigms, from which researchers interpret voluntary modulations in brain activity to glean information about patients’ residual cognitive functions and emotions. The discovery of such responsiveness raises ethical and legal issues concerning the exercise of autonomy and capacity for decisionmaking on matters such as healthcare, involvement in research, and (...) end of life. These advances have generated demands for access to the technology against a complex background of continued scientific advancement, questions about just allocation of healthcare resources, and unresolved legal issues. Interviews with professionals whose work is relevant to patients with disorders of consciousness reveal priorities concerning further basic research, legal and policy issues, and clinical considerations. (shrink)

Discussions of withdrawal of life support often revolve around a patient’s perceived level of suffering or lack of experience. Personhood, however, is often linked to personal agency. In the present study, 279 laypeople estimated the amount of agency and experience in hypothetical patients differing in degree of consciousness. Participants also indicated whether they would choose to maintain or terminate life support. Patients were more likely to terminate life support for a patient in a persistent vegetative state, followed by one with (...) amyotrophic lateral sclerosis and in a minimally conscious state. The decision to maintain life support was reliably predicted by perceptions of a patient’s agency but life support decisions were not significantly predicted by ratings of experience. In sum, decisions regarding maintaining life support are more influenced by perceptions of a patient’s ability to plan and act than by perceptions of a patient’s ability to feel or experience. (shrink)